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ShareSpinal Cord Injury/Disorder Groups Unite to Advance National Policy Issues
At a recent meeting in Washington, DC, 19 national organizations and institutions working to improve the lives of individuals with spinal cord injuries or disorders (SCI/D) joined together to establish the Spinal Cord Leaders Council. The purpose of the Leaders Council is to advance federal legislative and regulatory policies that would empower persons with SCI/D to lead more active and productive lives.
Launched during a 2006 summit on spinal cord injury, hosted by the National Spinal Cord Injury Association (NSCIA), the Spinal Cord Leaders Council was formalized by the leaders of the 19 active organizations in November 2007.
"One of NSCIA's goals in convening the 2005 and 2006 SCI Summits was to bring together the leaders of the various organizations and groups serving people with SCI/D, with a plan to get those leaders to work more closely together," said Marcie Roth, NSCIA executive director and CEO. "We convened the first meeting of the leadership just a year ago, and I am thrilled that we have already formalized the group into the Spinal Cord Leaders Council with formal structure, working committees and an active membership with broad representation."
Participating organizations in the Spinal Cord Leaders Council include the Christopher and Dana Reeve Foundation, the Kennedy Krieger Institute, the National Spinal Cord Injury Association, the Paralyzed Veterans of America, the Sam Schmidt Paralysis Foundation, the Miami Project to Cure Paralysis, Craig Hospital, the American Spinal Injury Association, the Commission on the Accreditation of Rehabilitation Facilities, the National Rehabilitation Hospital, the Shepherd Center, the United Spinal Association, the University of Utah-Rehabilitation Services, the Rehabilitation Institute of Indianapolis, the Keck Center for Collaborative Neuroscience, the Craig H. Neilsen Foundation, the ITEM Coalition, New Mobility magazine, the American Association of SCI Nurses, the American Association of SCI Psychologists and Social Workers, the American Paraplegia Society and the American Spinal Injury Association.
The New York City-based United Spinal Association was elected secretariat of the Council, and its president, Paul J. Tobin, was elected the Council's first chairperson. Tobin noted, "formation of the Council is a unique opportunity to pool resources and grass roots voices of people with SCI/D in our nation to achieve breakthroughs on issues too long neglected."
The Council selected three major issues for its 2007-2008 Policy Agenda: first, to abolish the Centers for Medicare and Medicaid Services "in the home" policy, which allows issuance of a power-operated wheelchair or scooter to a beneficiary only if it is needed to move within the home, but bans this type of wheelchair if needed to move within the community; second, enactment by the Congress of the Christopher and Dana Reeve Paralysis Act to promote spinal cord paralysis research and to improve SCI/D rehabilitation; and third, ensure that critical health care issues facing Americans with spinal cord injuries and dysfunction are clearly articulated in the health care platforms of the 2008 presidential candidates.
NSCIA enables people with SCI/D to achieve their highest level of independence, health and quality of life by providing resources, services, and peer support.
NSCIA actively advocates for best practices and public policies that proactively affect people with SCI/D, their families and service providers. We conduct public policy initiatives through our chapters and at the national level. The organization has developed and maintains close working relationships with key contacts at the White House, in Congress, and strategic federal agencies, and actively collaborates with other national organizations on issues of mutual concern.